my own little star-shapped hole in the universe

lana’s story

I have been rather quiet lately and I know that’s rather unfair of me. Although I have many reasons I shall not go into them at the moment. To be honest I’m not much up to writing anything these days, but I came on to post this very special video for a very special reason.

My friend Natalie has a brilliant, beautiful, incredibly strong daughter who, very sadly, suffers with the same neurological condition that I was diagnosed with a year and a half ago. Her daughter, Lana, was only 5 years old when she was diagnosed. The following is in Natalie’s words:

“Since that day she has endured over 100 hospital admissions, 36 General Anaesthetics including 19 Lumbar Punctures, 3 ICP bolts, and multiple shunt surgeries on her spine, abdomen and brain.

She developed a Chiari Malformation, lost peripheral vision, has an acquired brain injury, uses a wheelchair and attends school part time. She has lost 4 years of her childhood to pain and debilitating symptoms.

Lana is now 9 years old and still smiling. She has an amazing outlook on life, never feels sorry for herself and believes that her Grandfather (IIH UK Chair), myself and the rest of the IIH UK team will work endlessly to help IIH sufferers across the UK, maybe one day the world.”

Natalie made the above video before Lana’s brain surgery and I wanted to share it with you. What I have been through is not dissimilar to what little Lana has struggled with though, thankfully (so far), less severe. Plus, I’m an adult which, I think, makes it easier somehow.

IIH UK is a registered charity in the UK and they work tirelessly to raise awareness of this debilitating condition – including raising awareness among doctors and surgeons as the condition is rare enough that it is often misdiagnosed or missed completely. Hopefully raising the profile of this rare condition will lead to better treatments, faster diagnoses and, perhaps one day, even a cure.

As you may or may not know I am currently recovering from a major operation where they inserted a lumbar-peritoneal shunt into my spine to automatically drain the excess fluid from my brain. This is not a cure for my IIH, this is only a treatment. We can hope that it works well for me – far too often that is not the case and further operations are required.

I, like little Lana, try to put a smile on even on my worst days. It is not easy having an invisible condition, but I made my decision a long time ago that I would not let this condition change who I am. So I smile. As I often joke with my ophthalmologists, neurologists and neurosurgeon – Yes, I know there are far worse things to have, but I’d just as soon not have IIH either, if it’s all the same.

Anyway, I wanted to share Natalie & Lana’s story with you, share the video which is heart-breaking and hopeful at the same time. Please take the time to watch Lana’s story and, if you can, take the time to visit the IIH UK Website to learn more about this rare and terrible condition.

Oh, and if you’re feeling terribly generous, you can go to my Just Giving page – I’m not fundraising for any specific event at the moment as I am recovering from surgery, but once I am well enough I hope to do everything I can to raise funds for IIH UK.